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2016-05-27 11:19 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 11:19 pm - Original Item - Comments (View)

2016-05-27 10:21 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 10:21 pm - Original Item - Comments (View)

2016-05-27 9:19 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 9:19 pm - Original Item - Comments (View)

2016-05-27 8:21 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 8:21 pm - Original Item - Comments (View)

2016-05-27 7:19 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 7:19 pm - Original Item - Comments (View)

2016-05-27 6:19 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 6:19 pm - Original Item - Comments (View)

2016-05-27 5:18 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 5:18 pm - Original Item - Comments (View)

The #Path2Cures Shines a Light on NF

The House Energy and Commerce Committee (R) posted a Press Release on May 27, 2016 | 5:03 pm - Original Item - Comments (View)
As the month of May comes to a close, we wanted to highlight Neurofibromatosis (NF) Awareness Month. The Children’s Tumor Foundation marked the occasion earlier this month by encouraging states to “Shine a Light on NF” by lighting up various landmarks. The call was heard loud and clear – check out some of this year’s brightest efforts. [[{"fid":"1001","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"241","width":"683","class":"media-element file-full"}}]] Efforts to Shine a Light on NF in Niagara Falls and the Children’s Hospital of Philadelphia. #EndNF But it’s about more than just colorful lights. Some patients recently shared their personal stories with the Children’s Tumor Foundation, and we thought they were pretty inspiring. [[{"fid":"1002","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"372","width":"304","class":"media-element file-full"}}]] Aidan Fraser, 16 of New York, was diagnosed with NF1 at just eight months old. Six months later, his legs gave out and he was paralyzed from the waist down. In his first few years of life, Aidan had surgeries and faced tremendous adversity – and not just his own. At 21 months, Aidan’s father was killed in the September 11th terrorist attacks. But Aidan and his family have hope. With his current MEK Inhibitor treatment, Aidan’s tumor has shrunk nearly 40 percent. [[{"fid":"1003","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"372","width":"304","class":"media-element file-full"}}]] Jess Toews, 34 of Kentucky, was diagnosed with NF2 at the age of 27. One year later on her 28th birthday, Jess had surgery to remove a tumor on her brain. With the removal of the tumor, came the loss of Jess’ hearing on the left side. In March of 2015, Jess had a significant drop in almost all of the hearing on her right side. “The thought of never hearing my young kids laugh again was pretty devastating,” recalls Jess. But today, thanks to being put on the Avastin drug, Jess has regained a significant amount of her hearing – and even had 80 percent word recognition on her right side. [[{"fid":"1004","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"374","width":"303","class":"media-element file-full"}}]] Odessa Black, 28 of Virginia, was diagnosed with NF1 when she was six years old. After an MRI revealed a large tumor on her spine at the age of 14, she underwent three major surgeries over the next five years. Since 2010, Odessa gradually lost the ability to walk and use her arms and hands, and is now in a wheelchair. Odessa’s neck tumors have regrown, and doctors believe they are inoperable. Today Odessa is participating in a two-year MEK Inhibitor drug trial, which focuses on the tumors in her neck. After 18 months of treatment, results show a 25 percent reduction in the volume of her tumors. [[{"fid":"1005","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"376","width":"307","class":"media-element file-full"}}]] Ryker Bennett, 6 of Utah, was diagnosed with NF1 when he was only six months old. At the age of one, Ryker underwent a full year of Carboplatin Chemo, including port surgeries to treat two optic nerve gliomas. Ryker also had several de-bulking surgeries to try to preserve his vision – ultimately, they were not successful. Additionally, Ryker also recently went through a 12-month clinical trial to help shrink his plexiform tumor, which also was unsuccessful. That luck changed when he went on the MEK inhibitor trial, which resulted in his tumor shrinking 27 percent in only four months. There’s one thing in common with all four patients – while their therapies are working now, they won’t forever. Research has always been a critical component to treating diseases like NF, and the effort to deliver #CuresNow will boost those developments. By prioritizing the important work of our researchers, and incentivizing the development of cutting edge and repurposed treatments, the delivery of cures will be greatly accelerated. H.R. 6, the 21st Century Cures Act, accelerates the entire process, and gives hope to patients and their loved ones. Together, we can #EndNF. #CuresIn4Words: Aidan, Jess, Odessa, Ryker. ###  

2016-05-27 4:20 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 4:20 pm - Original Item - Comments (View)

2016-05-27 3:20 pm

Marion Berry's House Member Office (D-AR-01) posted a Blog Post on May 27, 2016 | 3:20 pm - Original Item - Comments (View)
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